The Road Less Travelled

Severe M.E. makes for a mean travelling companion. But Zoe Williams, having heard from many others with M.E., is full of ideas to tackle problems encountered on the road

Profound difficulties with travelling are common among people severely affected by M.E. I have left my village seven times in a decade; others have not moved from their homes at all, and those who are able to go out regularly need to pace themselves with care.

Why travelling is so difficult

Simon McGrath echoes many when he says: 'The straighter and smoother the road, the better. It's bends, roundabouts, bumpy roads and stopping and starting that are most tiring for me.' Dr Michael Midgley explains: 'Travelling uses lots of energy partly because the muscles automatically try to compensate for the movement and vibration; you can't relax completely when you're being jolted around and in M.E. the muscles don't function normally.'

I received both positive and negative reports of motorways: positive because they are smooth and straight; negative because they are noisy and full of fumes. Dr Anne Maclntyre, in her book, M.E. A Practical Guide says a reaction to chemicals when travelling can be helped by taking extra Vitamin C (1-3g) before and during the journey, and by drinking plenty of water.

Your hard-learnt lessons are many and varied: Linda Crowhurst, for instance, makes sure the driver has put enough petrol in the tank before transporting her because petrol stations make her feel worse, while Tilly Upton finds sucking peppermints helps her travel sickness.

Comfort is paramount

Try to get as comfortable and well supported as possible before setting off. You may benefit from having padding under your legs and arms, a neck pillow and perhaps a handtowel around your waist as a lumbar support. Reduce vibration by sitting on a pillow and putting another under your feet.

Some of you mentioned that relaxation techniques such as breathing exercises can help to reduce the impact of the movement. Playing a relaxation tape or gentle music on a Walkman if you are well enough can aid relaxation and mask external sound.

If you have trouble getting in and out of a vehicle, a transfer board may be useful if the seat of your wheelchair and those in the car are of compatible height. One end of the board goes on the wheelchair seat and the other on the car seat, creating a continuous surface to manoeuvre along. No longer being able to transfer into most vehicles, Rhian Williams has now had a caravanette specially adapted with a rotating passenger seat, ramps and a permanent bed installed for rest stops. Vonne Evans, on the other hand, has discovered how to make a bed chair in her car by winding the front seat down flat. She sits on the back seat with legs raised on a pillow on the lowered front seat. 'It's like sitting up in bed,' she says. 'Being further back in the car also means the scenery does not rush past so quickly'.

Difficulty with sitting upright is common in severe M.E. The most widely used method is to recline the seat, although if you are able to travel sitting up it will give you the protection of a safety belt (also technically a legal requirement). Probably the safest method of travelling in a horizontal position is by stretcher ambulance. With a doctor's backing, these can be provided on the NHS for medical journeys. It is possible to hire one from St John's Ambulance or the Red Cross but this is very expensive. Funding for a particular journey can be sought from local charities such as Rotary and Lions Clubs.

My own favourite method has been travelling in a friend's people carrier. With the back seats laid flat the boot space is big enough to create a large bed using travel mattresses, duvets, blankets and a beanbag. Having lots of padding considerably reduces the vibration. Von Jones, on the other hand, lies along the back seat of a car wellsupported by cushions and pillows.

Travel survival kit

It's a good idea to have a 'travel pack' of things you might need on your journey. Rachel Thomas' bag contains an eye mask, ear defenders, plastic bags for travel sickness, a damp flannel, tissues, lots of water to drink and snacks. She finds air conditioning helpful in the summer and recommends using a vehicle with good suspension. Earplugs and ear defenders can be invaluable for the noise sensitive, while wrap-around sunglasses and/ or a sun cap will make light easier to bear. Argos stores sell a light shade which fixes to the window to reduce external glare. A mobile phone is also useful in case of emergencies.

Another common problem can be needing the toilet frequently if there is no public loo nearby, or if none are wheelchair accessible. Linda Crowhurst sensibly suggests planning routes around toilet stops or if necessary take a urine bottle or ladies' slipper urinal (from Boots).

Finally, keeping your eyes closed when travelling reduces stimulation, frustrating though this is when you want to look at the scenery.

Concessions for disabled travellers

Rachel's mum Liz tries to check out the route beforehand to minimize problems on the day including working out where to drop Rachel off because parking spaces can be too far away. The Blue (formerly orange) Badge scheme exists primarily to allow people with severe walking difficulties to park closer to their destination. Ask Social Services for a form or in Scotland, the Chief Executive or Social Work Department of your local council. Anyone on the higher rate of the mobility component of disability living allowance (DLA) qualifies for a badge, and others who have difficulty walking may also apply with a doctor's support.

In addition to the Blue Badge, various schemes are run in conjunction with local councils/Social Services departments across the country which allow disabled people to use public transport for free (e.g. the Freedom Pass in London) or to take advantage of reduced fares in wheelchair-accessible taxis. Again, it is generally easier to obtain these concessions if you receive the higher rate mobility component of DLA.

Another option for those able to use it is 'Dial-a-Ride' - a low cost door-to-door transport service for people with mobility problems who find it hard or impossible to use conventional public transport. Diala-Ride can be used for many journeys including shopping, visiting friends or attending doctors appointments. Call Tripscope for details of your local scheme. Dial-a-ride services and ambulances often go round picking up several people, which extends the length of the journey. If this would make you more ill, explain your difficulty and request a direct route. It might also be worth asking your local volunteer bureau or Dial-a-Ride about social car schemes which may be cheaper than travelling by taxi.

Is it worth it?

The impact of travelling can be significant, and as with other activities, pushing beyond your own limits could trigger deterioration. Bear in mind that you may feel worse than usual after the journey and so be less able to tackle stairs, alking, and general activity. It's an idea to try and organise for a room to be ready before you arrive so you can rest without delay. Packing and other preparation should be done well in advance (ideally by another person) to enable you to get plenty of rest before the journey.

If possible, explain a bit about your needs to the person driving; for example asking them to drive as smoothly as they can and perhaps not to chat or have the radio on. If you are able to rest in the vehicle, it can help to stop regularly - although some people find it easier to do the whole lot in one go and then collapse into bed afterwards. There are, of course, different levels of travel - a long journey, five minutes round the block, a trip downstairs or into the garden. If the aim of an outing is to improve quality of life, and yet you suffer so much that it has the opposite effect, you may find you benefit more from staying at home and finding other things to enjoy. Linda Crowhurst says: 'the most important thing I have learned about trying to go anywhere is to say "no" if I'm too ill. It's not worth pushing yourself if you really can't make it.' Where travelling is likely to be bad for your health, do ask (and keep asking) for home visits from doctors, dentists and therapists wherever possible.

But for those of you who can make it out, I'll end with Graham Wiles' advice: 'The key to a successful journey, whether long or short, is meticulous planning - seeing problems before they actually happen, and being prepared for them if they do.'

Good luck on the road less travelled.

'Transport and mobility' - a free supplementary sheet with further tips and useful contacts for advice on travelling and choosing mobility aids is available from the Wells Office.

Useful contacts